September 5, 2012
Thank you all for your love and support this month! A huge thanks to Cody Maple (www.codymaple.com) for designing our official logo! Sienna loves flowers and his design is very much ”Sienna,” a perfect bright and happy flower. She loves it! We also wanted to thank KIND Healthy Snacks (www.kindsnacks.com) for becoming our first goody bag sponsor for Sienna’s Splash Swimathon!
This weekend Sienna had her first official swim lesson (though she has been getting mommy swim lessons since she was 6 months old) and she loved it! She is getting fired up for her swimathon and also loves practicing her Tigress roar!
As far as Sienna’s health, after her neck flare-up in early August she had three smaller flare-ups on her trunk. We were very disappointed to see them, but they are quite small in comparison to her previous flare-ups and seem to continue to get smaller each day. The recent ones don’t seem to be leaving noticeable bone growth behind, and we are praying that continues to be the case. Last week we started her on Singulair, an additional medication thought to be complementary to Celebrex, and are pleased with the results so far. We are hopeful that it will continue to keep any future flare-ups at bay.
In our battle to help cure FOP, we have:
- Received almost 18,000 website views generated by over 3,800 visitors
- Raised over $55,000 for the IFOPA to fund research for a cure!
Also, please don’t forget, Sienna’s Splash Swimathon is October 6th from 2-5pm at Princeton University’s DeNunzio Pool.
Thank you to everyone who has signed up to swim or sponsored! The swimathon has raised almost $7,000 so far and the Tigress team is just $625 away from earning the right to wear flippers! The Tigers have earned the right to wear swimsuits and goggles but don’t yet have their paddles.
We’ve had several questions, so we wanted to outline how anyone can get involved, even remotely!
- Remote participation: Sponsor either the Tiger or Tigress team, or sponsor a specific swimmer (just pick Tiger or Tigress team based on their gender, and write the swimmer’s name in the comments section)
- Any and all swimmers are welcome to swim (competitive, recreational or retired!)
- Anyone and everyone is welcome to attend. This will be a hilarious day with good fun, good food and a silent auction! Silent auction details to come next month.
By popular demand, we have also decided that the first team to raise the team goal of $25,000 will be allowed to add floating obstacles to the opposing team’s lanes. We had in mind inflatable toys or rubber duckies, but if you are not a swimmer and would like to get involved by being an obstacle, let us know
Lots of love and hope,
Rory, Eric and Sienna